Although I have not hit a good baseline I have been making little progresses. I finally got to a place where I could resume wearing my elastic bands for my braces.
When wearing them from back top to bottom front it makes your jaws tight & before my DEFCON 5 flare in July 11 neck slightly tight as it is w/ normal people....well I have never been normal
3 Mondays & a couple of Tuesdays I had to call out due to muscle spasms, but I have got to finish my orthodontia treament so I called for help & after discussion of my issues my rheumy gave me Robaxin 500mg 3x day.
The first night I took it early, but still had to call in to get a couple extra hours of sleep before going to work, then something crazy happened......
I actually have some energy, these are not making me sleepy, my mind feels more normal & I feel more like myself - I am diggin this! (I really need ot put in my tag line all the meds I am on for just the FM & CFS)
I have been wanting to volunteer forever (always did growing up) & I have found an org I want to work with (homeless kitties of course) but I am just not physically there to do the adoption fairs or other things yet so I have found other ways I can help right now I am gov so I chose the org for my CFC donation & I love to crochet and have wanted to get back into it.
A few weeks ago when I started to crochet again I made sure I was using a big hook, but boy oh boy I could only do a few rows & my arm was worn out.
I am making tubbies (like a bowl) for kitties to feel secure - they seem to just love the yarn- pre-sick a couple years back it would have been nothing for me to whip out one or two an eve but now it is taking me about a week for one, BUT that is progress because I couldn't even concieve of doing it a month ago.
My cats have tested and approved of them! Jasmine tries to crawl in while I am crocheting - it doesn't work so well & Arianna thinks she can get in the little one but settles for laying on it.
Since my brain fog is starting to clear up I am getting a better grip on handling finances and such (I channel all of my energy to work w/ nothing for the eve).
I am a single crazy cat person with no SO to help me manage things so I do the best I can and I learning to be satisfied w/ that.
I have had several other illnesses over the last decade so I have learned how to fight & do some prioritization.
I was a Fire/EMT, did competitive drum corp style marching, cheerleading, am a Army Vet - while in I was on Army run teams & played football on Army teams. I had always stayed fit and have been no stranger to a variety pain - I had 9 1/2 hrs surgery on my head to remove cancer - 100 stitches & was back to work in a week, have done Mixed Martial Arts w/ only large experienced men students way better than me....so the point is I am no stranger to pain - I now naturally without thought surpress an incredible amount of pain so this is above and beyond that - most people would have already went to the ER (not FM folks) - I am even using music w/ headphones & Cranioelectrostimulation Therapy & yogic breathing - but the pain is still coming through and it is due to use of muscles - my legs are really screaming today & upper body. I took a couple things out to my detached garage & moved a couple things around - now I am having lashback. Last night I loaded a few dishes into the dishwasher and my arms & shoulders really ached. I have had knee surgery due to a football injury & physical therapy, even in MMA I still spared on one leg after I hurt the other knee & won - could barely walk & it took a couple days to actually finally go to the doc - this beats the heck out of it all.
I understand a bit about the mechanics of what is happening to my muscles - pretty much they are all tight - working them is stretching & tearing some fibrous tissue that has built up & the pain that comes two days later is usually due to little micro-tears in the muscle such as when you are working out - some schools in body building think this is good & some thoughts are Pilates is not destructive like that, however I liken our tight muscles to contractures that develop in patients in nursing homes that don't move & aren't exercised - so we have to move them, there is going to be some tearing, henceforth some pain - there has got to be a way to deal with it so I am not sitting at my desk w/ headphones just breathing the last three hours of work without being able to think because the pain is overruling the brain.
PS I did run to the store earlier to get some Valerian root (used it lots of times) because they way it works, I am thinking it may help - also going to pull out the Cat's Claw.View Thread
Recommend filing FMLA papers - this is to cover and protect yourself so you won't get demerits for needing to be out. I had never thought of it (still reasonable knew - just since mid-July w/ diagnosis) - my boss actually requested that I file them to protect me.
When I first talked to him he said his sister had fibro - so that helped so much with the explanations. I did research what accomodations that the ADA recommended and over the years I had already done them all in my cubicle so no modifications were needed.
Great discussion. For years I had docs who just ignored me when I said my number one complaint was fatigue. Last fall I changed insurances to help lower out of pocket costs - I had some emergenicies & an emergency surgery - costly. When I switched to Kaiser all of the caregivers have been exceptional.
I am fortunate to have collected a variety of things such as a Pilates Reformer, my Inversion Table etc. and to have attended the Army Medical School for Occupational Therapy and worked in the field - so at some point I look at myself and see myself as one of my patients and give myself a treatment plan -- in OT we focus more on activities of daily living - something I have had a problem with - but that also includes adding in small activies to do - maybe in the realm of the arts - but it has to be achievable to finish it - which builds your confidence and self esteem - we all know it just flat out sucks to be able to do no more than move from the bed to the couch or on really bad days wake up to pee, sleep, wake up for meds, sleep wake up to wash face, sleep....I like to color so if I color a mandala or even a child's coloring book it does not take me much to move.
I am sorry so many people have so much trouble getting someone to listen and someone to help. I have lived alone w/ cats for so many years (only 42) but what has truly helped is I have a medical field background plus the OT so while I agressively looked for docs and researched tons I was able to help myself a bit - and hear many of the conversations that I had w/ patients & apply them to myself. Also very helpful is I worked cardiology so I was able to use cardiac rehab empathy on myself for when I was unable to do anything but get myself to work (like now).
We have so much compassion for others we must have the same or more compassion and empathy for ourselves - a great way to do this is envision your complete self as another person and how would you feel toward them - not getting the toilet cleaned?
This syndrome is just so crazy and so life altering I have to focus on what I can do - each day is different, some days I can only watch the squirrels on my porch, some days chronic pain really wears on me, & some days my brain cells work much better.
I too have had my muscles complain after stretching.
I have thought about the massage chairs like they have at the pedicurist - Brookstone has some that even do your legs, but this is a big purchase so I will have to save bunches if I want one.View Thread
It does seem that each week I am making a little progress - last Friday was the first day that I went without my can and went to a meetin off-site to a building where I had to walk pretty far & survived it w/ only sore muscles & sleeping all day Saturday.
Last Sunday as a had-to-do I had to get groceries but then ended up with a day off on Tues - I was lifting stuff in/out of basket/car then carried stuff - the essential in. My upper traps locked down so tight it caused aching bone pain, but the good news it that was the only part of my body that hurt!
A bit ago one of my bird suet holders came up missing - I am positive a coon absconded w/ it again, but couldn't go down/up stairs to find it & it was very muddy out back. This morning, still half asleep and not so light out I decided to go downstairs outback to look for it after I fed all of the critters (birds, squirrels, cats). Well I found it & didn't even have to crawl under the bush. What I didn't consider is that I haven't been able to ascend stairs over the last few months since the DEFCON 5 flare & diagnosis of FM. Oddly I never even thought about the stairs or realized I walked up them until one stair from the top when my left quad started to complain - PROGRESS!!!!
I am now finallly into my recovery phase of all the muscle weakness & insane pain. I am, however finding out that as I start to do very gentle physical therapy (I used to be an occupational therapist) with myself my muscles throb & I can't find anything to stop it.
I would love any suggestions of what I can do to help my legs or my arms & my bum as I start to do more and do some gentle therapy - how can I get rid of the very deep throbbing?
I was driving to work this morning and this phrase kept running through my mind. Although newly diagnosed I have been sick for years - I guess pretty much was just plugging along until 1. someone believed me 2. I had enough sore points to diagnose the FM.
Many years ago I was teachning a Franklin Covey based time management class to my managers and in a video people said many inspiring things but the one that has always stuck was "I have cancer but cancer does not have me". At this point I was already a cancer survivor so I have hung onto this - I think it fits perfect with FM or anything else. We start to identify ourselves so much as the disease or syndrome we have.
So this phrase kept going this morning
I am tired but I AM OK I have pain but I AM OK My toilet needs clean but I AM OK I have past due bills but I AM OK I had cancer but I AM OK I had a GI bleed but I AM OK I had a hemorrhage & emergency surgery but I AM OK I survived crazy men but I AM OK I.....I AM OK
My body may be going through a lot of stuff - I see it as sort of a rollercoaster - I have to just hang on and not fight the symptoms (but fight for relief of the syndrome). At the center of my soul no matter what my body is going through I AM OK.
I have felt broken for so many years - honestly since I was 19 and raped but on the way to work this morning that phrase kept going through my mind - and I felt it through my whole body eventhough I hurt and things are all wacked out - I really am OK.
The sticky notes are working
I have sticking notes on my bedroom door and my mirror with affirmations on them - they always work so well. They just start to blend into the background but the mind still sees them and takes them as truth.
I highly recommend St. John's Wort. My magic dose is 2 pills twice a day. I always use Vitacost.com and I get the NSI (Vitacost) brand. Great products, great price, great shipping.
Now I say I use this, but many years of research and knowing what will/won't will with my prescription meds and I keep my docs informed of what supplements I also take.
I recently (a few weeks ago) started back on it. I had stopped because I was not sure how it would interact with my new drugs (recently diagnosed in an insane flare - I just turned 42). I was in horrible pain in my legs for two days and then in my minds eye I saw a bottle of St. John's Wort - I took two and it was like magic - no more pain for the rest of the weekend.
I do/have done thousands of hours of research over the years, I use many alternative modalities, I listen to my body/cells when it tells me what to get (I intuit many things), I work with advanced energy techniques - I have done this long enough to be able to trust those pictures or whispers from my body.
Right now my body has me eating two bananas in the morning and two for lunch -- I only eat bananas for medicinal purposes so I would not casually eat them, but I am making friends with them now
I can't imagine working 12 hour shifts - it would kill me. I just stopped taking mass transit because it took more time and I got home later. Now I get home in time to take my 2-3 hour nap before I can open a can of something to eat.
Do lots of Research...for females many supplements interfere with hormonal types of birth control as well as your meds.
I am curious if you are taking Vitamin D2 that the docs usually prescribe or D3, which is better.
I use Vitacost.com for virtually all of my supplements and the NSI Branch (which has now become Vitacost on many items). They have the best efficacy, I have found, along with the best price. They ship quickly.
They have different strengths - I take 5000 IU a day if I try to go below that I do have more pain. There are some interesting studies where docs have had their patients on higher doses a day. Most docs say do not go over 10,000 IU a week, however you are your own best advocate so my mantra is RESEARCH RESEARCH RESEARCH and realize that some things on the web aren't that reliable, then find what works for you.
Of course - add the caveat alway check with your doctor